‘In the past, “data infrastructure” meant beige boxes in large buildings….[Now] data infrastructure is code and people with skills,’ concludes the long awaited UK Goldacre report: ‘Better, broader, safer: using health data for research and analysis’.
Professor Ben Goldacre was tasked with conducting his independent review back in February 2021, with the objective to identify and overcome the ‘strategic or technical blockers’ to delivering ‘better, broader, safer use of NHS data for analysis and research’. Goldacre is a renowned data scientist and Oxford University professor of evidence-based medicine and is also notable recently for his work on COVID mortality risk factors during the pandemic.
The report emphasises up front the ‘untapped power and potential of NHS data’, which it describes as an ‘exceptional and globally important’ resource, representing the ‘full medical history of millions’ over 73 years, with an ‘almost unfathomable depth and potential’.
Terms of reference for the review included the following.
- How to facilitate access to NHS data, for example by researchers
- and innovators, while preserving patient privacy.
- Analysis of technical platforms which can maximise safety and efficiency.
- How to (rapidly) overcome the technical and cultural barriers to unlocking.
- How to avoid unhelpful monopolies over data access.
- How to resource and incentivise data science by the public and private sector.
- Significance of data quality issues in terms of impact on possible research uses.
The report recognises that raw data on its own is of limited utility, and that processing and well-designed data platforms are essential. It is critical of the current system which, it is said, relies on small un-joined up data projects, weak security practices and which cannot be scaled to enable the ‘kind of access needed for a world leader in data science’. Many of the detailed recommendations are targeted at unblocking bureaucracy and streamlining existing internal government processes.
The report is long and wide-ranging and sets out 185 separate recommendations. The emphasis is on adequate, front-loaded investment to bridge the gap between modern data science and ‘outdated’ and ‘insecure’ NHS data practices, including to provide adequate resources for platform and software development, and to ensure minimum standards are applied across the board so that data analysis can be transparent, shareable and reproducible.
Introducing the report, Health and Social Care Secretary, Sajid Javid, said that it:
‘…shows that we need to be as thoughtful as we are innovative, guided by safe ethical frameworks for providing access to data, as well as systems that ensure under-represented groups are well represented. It also…shows areas where we must boost our capability and capacity if we are to reach our full potential.’
Mr Javid added that the final version of the UK government’s data strategy, Data Saves Lives, will include the government’s response to these recommendations.
Some of the specific proposals include:
- Platforms and security: take concrete action on privacy and transparency – and acknowledge the shortcomings of pseudonymisation as a technique to manage patient privacy. Prof. Goldacre recommends the establishment of a small number of secure analytics platforms – shared ‘Trusted Research Environments’ (TREs) – which should be the norm for all future analysis of NHS patient records data, with other bulk flows of data to be mapped and shut down.
- Modernise and open up working methods for NHS data: including promoting and resourcing the use of minimum standards for data analysis enabling high quality, shared and re-usable code for data curation and analysis, including adopting RAP (Reproducible Analytical Pathways).
- Have a frank public conversation about commercial use of NHS data for innovation which ensures that the NHS gets ‘appropriate financial return’ where marketable innovations are driven by NHS data ‘which has been collected at great cost over many decades’ with exclusive commercial arrangements to be avoided.
TREs look set to take centre stage in this health data unlocking process, and the UK government announced last month that it had committed up to £200m to support NHS research into diagnostics and treatment through privacy-preserving TREs and digital clinical trial services.
ABPI reaction to the report
The Association of the British Pharmaceutical Industry (ABPI) welcomed the report, describing it as ‘worth the wait’ and noting that the review team ‘left no stone unturned’. The ABPI emphasised the importance of cross-system collaboration and identified certain opportunities where industry could bring something to the table, including:
- calling for more open discussion about how and why health data is used – with industry contribution vital. The industry referenced here its recent public consultation on industry principles for the use of health data (see our analysis of that development here); and
- the role the industry can play in supporting the NHS and the government in the challenge of making raw NHS data useable in secure and well-designed platforms, noting in particular how it could support the introduction of RAPs, such as those for curating data and assessing real-world performance of new medicines.
Colette Goldrick, ABPI Executive Director, Strategy, Research and Partnerships commented:
‘It is clear that there is still lots to be done before the accessibility, quality and security of UK data assets and infrastructure attains the advanced levels required for the transformation of the patient experience… while progress has been made in recent years to improve the quality and accessibility of UK data assets, it hasn’t yet been at the scale or speed needed to truly transform the lives of patients.’
Commentary and key takeaways
The Goldacre recommendations, if adopted, will help unlock vast NHS datasets, which will be of value to industry and to patient care.
We await with interest the Government’s Data Saves Lives Strategy which will respond to the Goldacre’s recommendations. Of particular interest for innovators and investors will be the government’s response to Goldacre’s recommendation to ensure that government gets its piece of the pie in terms of ensuring ‘appropriate financial return’ where marketable innovations are driven by NHS data.